The Problem With Personalized Medicine
gManZboy writes "Talk of individually tailored medical treatment isn't pie in the sky. This approach eventually will help us address risk factors even before a disease can invade our cells, and detect preclinical disease before it gets out of hand. What role will medical informatics play in this brave new world? Hint: Little data projects may be as important as big data projects such as gene sequencing. At a recent symposium on personalized medicine, Ezekiel J. Emanuel, MD, chairman of the Department of Medical Ethics and Health at the University of Pennsylvania, questioned whether it would make more sense to target all the lifestyle mistakes that patients make rather than analyze genetic defects. His view: 'Personalized medicine misses the most important fact about modern society--little ill health and premature death is genetic, much more is lifestyle and social.' Is Emanuel a dinosaur or a pragmatist?"
if obesity could be rolled back to the levels it had in the 1970s.
Everybody knows this, but medicine is a business first. Excuses sell better than solutions. End of story.
He is just a sane and honest man. It is no coincidence that in some areas live people more than 100 years without any medical treatment, and snacks, and chips, and coke, and GMO (as a matter of fact), and ......i arrested my case.
Through initiatives like NEMSIS (www.nemsis.org) and marrying that data with ER/hospital data, the loop closes for providers in the continuum of care. The data can drive performance improvement for each step in that continuum of care as hospitals have never been so informed about what happened on an EMS call and vice versa. This directly improves patient care on an individual level and on progressively higher levels. Several states are doing this with data with the leader being North Carolina.
The preclinical diagnostic power suck.
That is why this is not a good route.
Diagnostics even in the clinical stage is not often very well founded, unless you have a broken leg or something to that effect. Psychological disorders are really, really difficult to diagnose with decent accuracy, and therefore should never be treated a preclinical stage.
A can of worms or a jar of pills?
Part of the question is CAN it really be effectively changed by lifestyle changes over a whole population?
It's easy to say "eat less fat, and fewer calories and it will be better". We hear that all the time. Exercise more. No alcohol to excess.
But, actually getting people to follow it in a sustainable way hasn't happened in many cases.
When you have a method that well work, but you can't get people to follow, it's not very effective.
In some cases, drug interventions are more likely to be followed. Take a look at cholesterol meds (I live on em.). You can get people to take a pill a day more easily than giving up the cheeseburgers.
Maybe it should be that they change their lifestyles, but that's not the way it happens much of the time.
Another area which personalized med will help greatly is choosing which medication to use. Many times treating chronic illnesses requires switching drugs several times to find the ones that work best with fewest side effects. Having testing to identify how your body will react to a given medication would be very helpful.
Arguably, targeting things like lifestyle factors is also "personalized medicine", in the sense that treating patient X specially because a defect in their homozygous foo allele predisposes them to cardiac disease isn't all that different from treating patient X specially because getting no exercise predisposes them to cardiac disease.(and, in uncomfortably-many-but-not-all cases, the "personal" element is just the most visible factor in a stew that includes environmental and social influences, like diesel soot and cube farms...)
I'd be inclined to say that Emanuel is neither a dinosaur(he isn't rejecting the new-and-shiny out of hand, just pointing out that much of it offers questionable bang-for-buck compared to the low hanging fruit offered by seriously boring lifestyle stuff), nor a pragmatist(y'know why people like to ignore lifestyle factors and focus on genetic whiz-bangs and hypothetical personalized super-pills? Because lifestyle intervention lies dead at the center of the intersection of "really boring", "really hard", and "lousy patient compliance".
We already have plenty of good advice to go around(by no means perfect knowledge; but we know much better than we do), largely unheeded and often coexisting with social conditions that actively work against heeding it. We don't actually have personalized genetic-super-pills(with limited but important exceptions: oncology, for instance, has a number of genetic markers that have proved tractable to test for and highly useful to know. Some rare hereditary disorders have also been well worked up. Much of the rest of it remains in the "yeah, it sure does appear to run in families; and we made this mouse model by tweaking the genes like so; but that doesn't help you very much...); but we could probably get people to take them fairly regularly if we did...
One of the things 'personalized' medicine addresses is the 'well that's not me' factor that is in may people mind.
The reality is that a percentage of people in the population will never need to worry about cholesterol problems and the knowledge that such people exist allow others to live in the illusion that they may not have to worry about it either.
Personalized medicine will allow the Dr, to tell a person YOU need to not 'X' or you will have 'Y' happen.
The problem however is that it is always a percentage game. Some of the genes we have found so far increase a persons chances of developing a certain type of cancer by 1 or 2 %. So is that enough to warrant changers in behavior.
People who work in computers for a living already know that their carrier choice raises their cancer risk by something like 20% ( how many of them left their careers because of it though).
Part of the problem is understanding the risk ... and them excepting the consequences if they show up.
( are we allowed to do that anymore !!)
âoeTolerance applies only to persons, but never to truth. Intolerance applies only to truth, but never to persons.
Emanuel is right, but experience tells us that people don't want straight-forward advice about not eating deep-fried butter or exercising more. They want to do it anyways and be saved by medicine when it catches up to them.
Now: for a quick assessment of his chances: how many of us are sitting around on our butts reading /. instead of getting some exercise?
Yeah, I thought so. Maybe the genetic screening is worth doing after all.
Lacking <sarcasm> tags,
"If a frog had shock absorbers, it wouldn't bump its butt when it hopped."
Easy to say. It's proved more difficult to actually get people to lose weight.
You're coming at this from the typical leftist viewpoint of desiring to control everyone's lifestyles and choices, but that's not what personalized medicine is about. It's about figuring out what medicines you'll respond to the best, based on your genetics.
From your progressive, utopian angle you could also view it as avoiding administering expensive treatments that won't do much good for that patient, and thereby reducing total healthcare costs to the system. But the term is not about molding a more perfect society through more socially-correct behaving citizens. There are other words for that.
It is easier to "sell" (as in commercial, or even simply convincing) some treatment against a silent potential killer in your gene, than asking you to change your habit (stop smoking, drink less, ...) for an actual killer in your lifestyle. Same thing happen for about anything: people are scared of terrorists, but do not driving or even go boozing in high criminality area.
People do not give a shit when they are in charge, so in practice, short of making lifestyle change mandatory by law, you can only really work on the genetic defect. (smoking has 30% to kill you in the next 10 years - does not give a shit. A gene in your DNA give you 10% higher probability to have a heart attack before you are 70 - oh my god, I'm doomed - what can I do doctor)
The term "personalized medicine" is a buzzword. We've been targeting specific environmental things in specific people for a long time now. It turns out it is hard to get people to get in shape, control their blood pressure, and quit their bad habits. Genetics is as personal as it gets, so that has become the new holy grail. Genetics offers the ability to identify new risk factors and improve understanding of the underlying disease. Many of the identified common and even rare variants in disease don't lead to therapies, but they do tell us about the pathobiology, which may in turn lead to new discoveries and/or therapies. We would love to study gene-environment interactions, but there are major power issues when trying to do studies like this in sporadic, complex disease like heart disease, hypertension, stroke, and the like. We're still trying to develop large enough sample databases and robust analytic techniques that allow us to study the interplay between millions of genetic variants and the often difficult to quantify or report environmental exposures that may act in concert in additive or even multiplicative ways.
First off, this guy probably isn't some quack. UPENN is pretty hardcore about medicine. Second, part of me (the cynical part) wonders if this isn't partially because UPENN is in Philadelphia and Philadelphians (myself being one of them) aren't the healthiest people in the world. Lot's of smokers, an above-average overall occurrence of obesity... Could just be jaded.
Still, I'm inclined to agree. Unless we're talking about most cancers (which genes definitely have a lot to do with) lifestyle does have a major impact on your health and a lot of people like to ignore that.
...targeting lifestyle "mistakes"
Doesn't that sound like a conveniently vague catch all for justifying corporate or governmental control over people?
1) People who can't afford it and therefore suffer. This includes accidents, communicable diseases, etc. that aren't much dependent on obesity.
2) Huge amounts of resources spent (about half of all healthcare spending) on dragging out the process of dying for people who are, one way or another, going to die soon anyway. Most of them are geriatric patients with incurable progressive conditions: metastatic cancer, congestive heart disease, Alzheimer's, etc.
Better lifestyle practices will give us longer, healthier, and for many of us happier lives. They won't make us invulnerable nor immortal. They won't keep our families from bankrupting themseves trying to add one more week of misery in ICU when our time comes.
Lacking <sarcasm> tags,
...Emanuel seems to be missing it by a mile.
This field is for dealing with the little ugly gaps that neither broad pharmacology nor lifestyle adjustment can correct. Take the case of antidepressants, for example: they're extremely finicky (not all work in all people) and have a huge cost in side-effects before the benefits arise. It is an extremely high cost to both the patient's health and the support system to cope with a bad choice of antidepressant. The basis of this fickleness is genetic, and running the right test in advance can prevent bad combinations.
Personalized medicine is not a cure-all, it's a very precise tool in drug design and selection. I'm sure that won't stop lazy physicians and marketers from calling the regular diagnostic process "personalized," though.
Bio questions? Ask me to start a Q&A journal. Computer analogies available for most topics!
We're all focusing on the claim that personalized medicine is being used to exclusion of usual prevention. I don't think anyone is claiming that it will replace prevention. The argument here is ignoring other benefits.
One of the very real uses of personalized medicine/genomic diagnostics is treatment sensitivities. CYP450 is a perfect example of a variant that determines how you will react to medication. There are subsets of cancer that will respond to certain treatments and not others, and this is a way that we can elucidate these sorts of things.
Disclosure: I work on this stuff. It is a fishing expedition, but the benefits are very much worth it.
the 'healthcare crisis' is because the nature of healthcare changed and the delivery mechanism did not. In the 1970s, healthcare was very limited. A doctor could set a bone, stitch you up, and blast you with radiation hoping for the best. In 40 years we've moved to things like personalized medicine (where for the price of $10,000 a month an aids patient can thrive, plus a raft of preventative medicines and maintenance medicines. Do you see the shift? We've gone from caring for a few major disasters and making you comfy when you die to maintaining the human body like you would any other machine.
An insurance model for delivering healthcare works for disasters and a one time end of life expense. It breaks when you're using healthcare for maintenance. The thing anyone without socialized medicine is, unless you're so rich you can drop $10k/mo, you don't really have healthcare. Because as soon as you need it, I'm mean you're really going to use it and use it regularly, your insurance provider is going to take it away. That's why America socialized medicine... for the elderly. But even they're going to lose it soon. Just you wait. You think it's there, but it's not. And by the time you realize it, it'll be too late. Poverty will crush you and you won't matter any more. You'll just fall by the way side.
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There are examples of people who have been very absusive to their bodies and yet lived long, healthy lives (Ossy, anyone?). There are other people who seem to be cautious enough, yet deal with various health issues. Having better information up front about one's own genetic risks allows for better decisions based on reality, not "professional" opinions founded on years of "experience" of observing the outputs of a very complicated black box by your doctor.
Bottom line, DNA is the source code of how our bodies work. Some may think it is pretty useless at this point, but we will only truly understand its value once we understand it. Most of science works like this . . .
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all jobs needs paid sick days as some places make sick people come in to work and even with paid sick days to many boss have the suck it up idea and that just get's the full office sick. In foodservice this get's others sick as well.
Is that most people don't want to live healthy lifestyles. And, you know, I could care less. If someone wants to kill themselves slowly by smoking, drinking, being sedentary, and eating garbage, so be it. In a free society, with free association and free expression, one SHOULD be able to live badly or even kill themselves, provided they aren't hurting anyone else. I might not agree with it, but it's not my life, and from a moral standpoint, I have no right to impose my concept of lifestyle on them.
The goal of personalized medicine is to identify which genomic pattern in a population will respond to a given drug, or identify which drug will work for a given person's genome. It has nothing to do with improving public health policy and only tangentially with reducing health care costs. It has a lot to do with reducing time-to-treatment and making drugs more efficacious.
Emanuel is right that it's nuts to waste money on gene-based treatments which target only the symptoms of disease, when fixing the disease itself necessarily requires a change in lifestyle, which is something that technology cannot and will not fix. Once we accept this, the next step is simply, "How"?
All western countries are healthier than the US. Let's start by looking at what they're doing and then reward americans for doing more of that.
One day, you might be fighting to stay alive too (or maybe you don't think so - but maybe you'll change your mind in 50 years' time).
If I'm still alive at 110, I doubt very much that I'll be all that stressed out about checking out. Plenty of family members have gone peacefully when they got tired of living -- including my maternal (step-)grandmother who basically just withdrew until she shut down and my paternal (step-)grandmother who lived to 97 and got tired of burying children and grandchildren. I think my mother is headed that way soon.
So be it. Give me a good view out over the Rio Grande and some (great-)grandchildren in the house. It's been a blast so far and the rest is gravy.
Lacking <sarcasm> tags,
You can get people to take a pill a day more easily than giving up the cheeseburgers.
Then why not bring back Ayds? Unlike AIDS, Ayds was a safe and effective appetite suppressant candy that one would eat before a meal to decrease one's desire to "has cheezburger".
Dr. Emanuel's thinking seems right on this; there's evidence that "genetics only account for approximately 20 to 30 percent of an individual's chance of surviving to age 85." (see Scientific American) Maybe rather than provide cures, personalized medicine could be used to give people a more accurate estimate of how long they're going to live, based off various lifestyle decisions. Nothing motivates like a deadline.
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Is Emanuel a dinosaur or a pragmatist?
Of course, the submitter left off the fact that he might be neither a dinosaur nor a pragmatist. Rather, he could be quite correct in his assessment.
There is no "-1 offended" or "-1 you don't agree with me" mod options for a reason.
In a free society, with free association and free expression, one SHOULD be able to live badly or even kill themselves, provided they aren't hurting anyone else.
People with medical problems might be hurting others in their family. And they might be hurting the general public when they turn to crime to support a way to get healthy again, as dramatized in the 2002 film John Q.
High Fructose Corn Syrup has the same number of calories per gram as any other carbohydrate (including so-called "zero calorie" sweeteners). What differs is the level of sweetness per gram. All sugar interferes with your body's "I'm full" hormone.
HFCS provides a smoothness to drinks which is hard to accomplish with cane or beet sugar.
Honestly, if you do the things you do you've decided that the perks outweigh the disadvantages. If you decide that gorging at McDonald's is better than eating a salad, that's a choice. If you decide a night out on the down getting seriously drunk or high is worth it, it's a choice. As long as I've paid plenty money in beer taxes and you can probably chop a year or two off my pensions relative to the healthy guys to cover any alcohol related injury or illness, what business is it to anyone else if I choose to poison myself? Because, yeah that's the toxic part of intoxication and in mild forms it's very comfortable. And I still expect good medical treatment because I have paid for that extra risk, least that's the way I feel it works here in Norway with high alcohol tax and universal healthcare. Same with smokers, they surely pay more than the cost as there's a real witch hunt out for them. They don't tax drugs because they're illegal and McDonald's because they haven't found a good way, but I'm sure they want to. Oh yes, and I'm aware that's not entirely true that it's my own business since you have things like a few people getting aggressive and violent when drunk, but the health effects are my business.
People with bad genes though, they can't help it. They never had that choice, they were born with the choice already made for them. Maybe a few things you can help with - like more intense cancer checks if you know you're predisposed for cancer - but I'd say the far more interesting part would be looking for cures, before you even get so far as the disease. Oh you're predisposed to cancer, here's a shot of retrovirus that will change those genes before it even gets so far. Or better yet, if we find people with immunities or other good qualities we can use that almost like a vaccine. Natural selection has practically no effect when you're past the age people get kids, if we want to live longer and healthier we'll probably have to manipulate our bodies to do that ourselves. And don't give me anything about my genes being who I am, if you offer me a gene-altering drug so that'll I never get Alzheimer's and end my life like a mindless zombie I'd take it. Feel free to refuse, I hear there's people that won't even take blood transplants and I respect that, just don't expect me to agree with them.
Live today, because you never know what tomorrow brings
I am constantly bombarded by idiots telling me things like "eat less carbs", but my personal medical issues makes eating more protien worse for my body than eating carbs.
ALL medicine should be personalized - not just for your genes, but for your particular conditions.
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But maybe it can lead to better knowledge of what lifestyle factors matter to an individual. This idea that there is the One True Lifestyle is just as silly as the idea that one drug works for all. Different people have different things they need and so on. This would be why there are those people who can drink and smoke and not exercise all their life, and yet live to a ripe old age (my grandpa is one of those). For most people, those choices are harmful, for some that matter little to not at all.
Or things like "Don't eat salt, it'll raise your blood pressure," no actually, that's not at all the case. Some people will not have high blood pressure, it just isn't a problem for them. Salt intake is totally irrelevant to that for them. Others will have high blood pressure and reducing sodium intake won't do anything for it, it will require other things. Others still will have their blood pressure affected by sodium intake, and thus will need to limit it to keep their blood pressure under control.
So it would be great if we could figure this out, and tailor medical advice to the individual. Figure out what is and isn't important to that person.
If obesity is such a concern the political solution is the best solution to cut healthcare costs.
Start by banning HFCS on the federal level and all chemicals like it. Just like asbestos had to be banned, HFCS has to be banned. Pollutants have to be regulated as these environmental factors affect the metabolism as well. Pollution in the plastic containers for example.
After the unhealthy ingredients such as HFCS and transfats are banned then we can logically tackle the obesity problem. Until that point we cannot take any initiative to combat obsesity seriously.
On one level the patient has to take more responsibility for their health but on the other level the patient should be as well informed as their doctor. There used to be a time where you had to go to medical school to learn certain things. On some level that is still the case. Get rid of the paywalls for medical journals so that patients can keep up with the latest research.
Allow patients to be diagnosed through the internet through remote terminals if necessary. The technology will eventually exist to detect metabolic syndrome using light sensors. The technology will eventually exist to detect blood sugar levels using the same means or through breath. Blood pressure could be remotely determined as well. Remote monitoring will be the major advance.
Don't get me wrong medicine will always be expensive and it probably should be, but it doesn't have to be as expensive as it is. First there aren't nearly enough doctors. Second the cost of medicine is way more expensive than it has to be. Third there isn't enough focus on prevention or preventative care.
Personalized medicine might tell a doctor what sort of preventative care program to put a patient on but it wont necessarily prevent anything if the environment is continuously polluted to the point where the patient gets sick regardless of lifestyle. The asthma epidemic is environmental not lifestyle. Children are developing obesity so it's not lifestyle anymore. What are we going to do? Wait until children are dying of heart attacks and cancer before we figure it out?
Their air will still be toxic. Their water will still be polluted. Their food will still be processed with chemicals.
What do you expect? No amount of lifestyle change can protect you from every possible form of pollution in the environment.
For some people smoking is more dangerous than a high calorie slice of pizza and coke each day. For another person it's drinking. For another person it's something else.
However there are industrial chemicals that hurt everybody regardless of genes. Those have to be removed.
Then depending on what genes a person has and what harms that persons health a personal lifestyle program can be designed. Some people will never get obese and can't put on fat no matter what or how much they seem to eat. Another person puts on fat easily. This is entirely genetic.
But the person who gets fat easily shouldn't eat the same way or act the same as the person who never gets fat. Just like the person who gets addicted to drugs shouldn't smoke while the person who never gets addicted can avoid a drug problem. Lifestyle changes can help but lifestyle changes don't solve every problem and aren't really the responsibility of the doctor any more than the doctor can solve asthma by making the air less polluted.
Patients can't do that. Healthcare diagnosis is too complex. There have been several stories on this and it's the other reason why private insurance based healthcare doesn't work. I won't try to explain it myself, just read this article. Long story short, buying 'healthcare' != 'pizza'.
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"Their air will still be toxic"
In some places. Certainly better than Gary Indiana was in the early 70s. I can vouch personally for that.
"Their water will still be polluted"
In some places. But I'll take my chances with small amounts of runoff related chemicals as opposed to the old style pollutants like sewage, cholera, shigella, etc.
"Their food will still be processed with chemicals"
I'm still waiting to see this food with no chemicals. Every bit that I've seen has chemicals like sodium chloride, dihydrogen monoxide, and an array of chemicals so complex and unknown that we can't even begin to synthesize them in a laboratory.
You would have though that such a marvel would be known to the researchers at a major ag/food science/biochem research university where I work.
Maybe they're all just paid off by the $conspiracy. ;)
This is just nonsense. You guys talk about HFCS and chemicals and hormones the way that tribal peoples talk about evil spirits. If you just say the right words and eat the "clean" foods, you'll be protected from the evil spirits and the sorcerers and the witches lurking out in the darkness.
Fructose is just fruit sugar. It's abundant in apples and pears and other fruits. Also in honey. It's not magic. It's not evil. It's sugar. Too much is bad for you, just like any other sugar or starch.
Please try to either be rational or be quiet. Thanks.
To be able to personally tailor medicine to an individual, you need an effective diagnostic mechanism, and an effective way to decide, based on the diagnosis and the patient, what course of treatment will work. Trying to do this on the basis of a patient's genetics is unlikely to be effective in the near future, if at all.
Te begin with, studies of the kind we see today tend to give results like 'gene X affects incidence of disease Y by n%'. To rely on this for a diagnosis and treatment amounts to a guessing game, and the number of such n% guesses compounded together will cause accuracy of the diagnosis to be little better than random chance, yet appear to have the certain blessing of the medical establishment. Establishing the effect of a gene is, in any case, far less certain than seems to be made out, because there is little understanding of how an altered gene causes a problem even if a correlation is detected.
I fear personalised medicine is the road to mass Russian Roulette medicine, and I hope the 'brave new and shiny' factor doesn't cause it to be overly relied upon.
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You have, right?
Lacking <sarcasm> tags,
Wow, you're absolutely terrible if you think this is a bad thing.
I obviously wasn't clear. FWIW, I have legally-enforcable advance directives (not to mention some kids and a mistress who have heard me rant about it for years) to make sure that nobody can spend what I've saved for my grandchildren on useless ICU charges.
Lacking <sarcasm> tags,
My wishes are well known and documented. Of course, in the scenario I was speaking of, I will be able to convey those wishes personally.
"profit motive".
Markets are not good tools for optimizing emergency services.
So when someone gets cancer are you going to tell them to workout more, or do you want to test their gene expression profile and match it against a drug that targets a suggested pathway?
Maslow's hierarchy of needs: http://en.wikipedia.org/wiki/Maslow's_hierarchy_of_needs
Healthcare is a Safety need. It's lower on the list than Physiological needs.
How about we tackle the more immediately problems of food, clothing, and shelter for everyone, and then we can move on to the rest of the hierarchy after those are solved?
-- Terry
http://www.drfuhrman.com/library/article16.aspx
"Tragically, most people are totally unaware that they are only a few weeks of discipline away from being able to comfortably maintain healthful dietary habits -- and to keep away from the products that can result in the destruction of their health. Instead, most people think that if they were to eat more healthfully, they would be condemned to a life of greatly reduced gustatory pleasure -- thinking that the process of Phase IV will last forever. In our new book, The Pleasure Trap, we explain this extraordinarily deceptive and problematic situation -- and how to master this hidden force that undermines health and happiness."
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.
The main difference is their attempts at making them sterile so that they are the only source for said variant. That's where problems exist.
That and the fact that unlike traditional GM, recombinant GM changes food faster than people's digestive and immune systems end up adapting. For example, a gene from a Brazil nut tree got spliced into soybeans used in cattle feed. Beef from cows who ate that feed ended up triggering reactions in people with a Brazil nut allergy.